May 1, 2020
The RAIN 701 (Cohort C) phase 2 clinical trial at UCHealth is a GO. I had all the tests; full body CT, chest CT, brain MRI, bone scans and labs to determine that I met all of the qualifications. I am grateful beyond words that I have been included. I’m also seeing how I have interwoven my interpretation of “failure” with the construct of control or the lack thereof. Which once again bodes the question, “What is failure and how can one possibly fail at life and death?” This seems to be a theme for me.
I didn’t realize how unsettling this process can be. This is evidence based medicine and there are rules to be followed. The results must be measurable, meet the standards for replication and the rules complied with. The rules are stringent as this is where medical science meets a human being, a real living breathing person. When my Dad worked in the lab for American Gilsonite and Standard Oil, he worked in the scientific sphere and I could grasp with my child’s understanding a tiny bit of what he found fascinating about chemistry. But my experiences have taught me that the Universe is fluid, constantly in flux, ever changing, ever morphing and there is a science to this as well. I am mesmerized by the in-between but the fact remains that when conducting scientific medical trials, there are rules that govern outcomes.
To throw fuel on the fire, Covid-19 has determined that everyone is now living with new rules. The rules at the medical center are strict. Masks must be worn and unless you need someone to help you walk, only patients are admitted into the cancer center, at least for now.
I didn’t have my person with me yesterday. I didn’t have him with me last week when I experienced an infusion reaction during my first dose and ended up spending the night and most of the following day at University Hospital under observation. Cancer is hard to do alone on a good day and in the era of Covid-19, it can feel like even the good days take on a flavor of unfairness and heightened fear of the unknown. This is difficult for both of us. Jim has been with me for every appointment, scan, and infusion. The disappointment and fear showed loud and clear in our eyes peaking above our masks as he dropped me at the door, spending his day waiting for phone updates. We are dealing with this new reality but it’s not been easy. I miss his steady presence, his watchful eyes and his comforting love beside me as I allow a study drug to drip into my veins.
My infusions are once per week and that day is extremely long. I start the day with labs followed by waiting for the results. This drug lowers potassium and so I take daily supplements and get my levels checked every week. Next is a check in with my care team for symptom updates and a hands on once over followed by an EKG. If everything checks out, I move to the infusion room for pre-meds followed by the study drug which runs for 90 minutes. Then the waiting continues with EKG’s every hour for four hours to monitor any QT prolongation (interruption in heart rhythm) along with vitals. Because of the infusion reaction from the first dose, we doubled my pre-meds, added another med and increased the duration. It seems to have done the trick and 10 hours after Jim dropped me off he picked me up. I am impressed with everyone at UCHealth Cancer Center. They have taken exceptional care with me and are as committed as I am to making sure I have the best outcome possible. Scans will be done after 8 weeks to see how well the study drug is working.
During my waiting to qualify period, I decided to make cloth masks from fabric I have refused to part with. This box-o-fabric has moved with us to every new house for the past 35 years. Out came the sewing machine and I was reunited with my sewing table making retro fabric masks from the early 80’s and beyond. This has been a great escape and I think I’ve made close to 60 masks. Wearing a mask used to be for Halloween or bank heists, now you can’t go anywhere without one. What can be learned about our fellows by only looking into their eyes? It’s been said that the eyes are the windows to the soul. When we only have another’s eyes and body language to interpret what is being said, what do we see and hear? How comfortable are we with this intimate act? Better food for thought, how uncomfortable are we with either wearing a mask or looking at someone else with a mask? Do we hold the gaze or look away? I find that even eyes have masks that can attempt to hide what we are fearful of expressing. Eyes can also reveal the utter magic of a soul expressing itself in human form. Yes, this is a very intimate act.
And so fellow travelers, we continue to maneuver through our ever changing world.
Stay safe, stay hopeful and stay loving.